S10E29: FRUSTRATION OF APHASIA IN COUPLES.

Hello my beautiful survivor, how are you? This is Karina, the hosting creator behind Stroke Surviving the Odds of the podcast. This is a space beyond stroke surviving. This is where I share everything I have learned in the last 28 years on being a stroke survivor. Surviving this world and the mission of the show is very clear.

Help you reclaim your life and your identity after stroke. It's important that you remember that if I can do it, so can you. 28 years ago, I survived to bring some dissection that led me to coma in the Latin syndrome. Today, as you can see, I'm part of you and I'm living my very best life. I encourage you to grab a pen and paper because the faintest of ink is better than the best memory. Come and join me here as we are recording today's episode. Today we're talking about living life with aphasia. Interesting topic.

That's when you really want to get your pen and paper out, because I have a couple of perspectives on that. And at the end I'm going to be giving you some little hacks on how you can help yourself. Once you have done your speech therapy, once you are capable of talking and aphasia is still part of you, well, there's something to be done about it.

Well, this came about. Do you want to laugh? This episode came about I was a guest on somebody else's show, and at the end of the show, the host, who's also a colleague and a friend of mine, brought to my attention that even today, 28 years later, I have aphasia. Now you have to remember, I'm Karina the Great. I had aphasia way back when, right? That's why I did speech therapy and I worked very hard on that. Well, and I thought everything was done and over with. Nope.

Having aphasia stays with you until you realize you still have aphasia. Yep, I know what I'm talking about. Aphasia is when things are super clear in your mind, but the connection between your mind and the words that you're saying are not the same. You have trouble conveying your thoughts. That can happen. Basically, aphasia doesn't just happen to stroke survivors. It can happen to anybody with a brain injury. It can happen to people with ADHD that have a hard time formulating their phrases, formulating their thoughts, and it can be very, very frustrating. And I've been living life for the past 28 years knowing that it was difficult for me sometimes to put my ideas out there.

Or my boss would ask me a question and I would go from east to go to West. Do you understand what I mean? It it just made sense. But at the end I always said, well, I always go from one extreme to the next, but everything merges together. It does, yes, but it does not have to. What if you could learn tricks?

You could learn things that I'm also putting into practice? What if you learn these things that can help you not go from one extreme to the next, but speak clearly right off the bat? Wouldn't that be great? Having aphasia is very frustrating, both for you and for other people. It can go to the extreme of the other person telling you, can you speak clearly? I can't understand you.

You're making no sense right now. Does that sound familiar, guys? Have you heard this in your life? Has your loved one tell you this? Because I know mine has. On the other extreme, it can be annoying to you. It could be frustrating to you. It could make you feel like a little bit of a freak because sometimes I, I don't lie.

I feel like, my God, what's wrong with me? I still think like that, guys. But there is something wrong with us. There is. We had a stroke. We have aphasia. Now that we know it, we can do something about it. I don't know about you, but I hate repeating myself. I don't have enough energy to say it once.

Imagine having to repeat two and three times. It's really frustrating. Do you have to do that too? Oh, my gosh. Tell me in the comments, what's the thing you repeat the most often that people have a hard time understanding? I want to know. I'm curious. Tell me in the comments. So say it's morning and you wake up.

You go in the kitchen and you go get a cup of coffee and you pet the dog and your hubby is there. Well, and you're like, good morning, I had this as a dream, blah, blah, blah, blah, blah. OK. And he's looking at you like what? I can't understand you. You make no sense. And you say it again. I had a dream. I dreamt about this and that and this and that. And he's still looking at you.

And then you get pissed. I just fucking told you. How many ways do you want me to tell you? I had a dream last night? And you actually pronounce everything really clearly. You see the difference when I talk regular to you guys and when I really pronounce everything, there's a difference, right?

So it's frustrating for them, but it's also frustrating for you. And that creates a problem in itself because that's a lack of communication between the two. And at one point, you don't want to talk to them because you're always fucking up and they don't want to talk to you because they never understand. But there's so much love between the two of you. What I just shared with you is 1 particular scenario where aphasia can be disruptive in your relationship. Now it also has come to my attention this week from a person that is not a stroke survivor. And she said your show is really good, but it lacks structure. It lacks cohesiveness.

Huh. A part of me is getting what she's saying, but the other part of me is saying I have aphasia. I'm a stroke survivor. You are not when I talk to stroke survivors, when you talk to stroke survivors in different groups or on the phone or on Messenger, do you ever get that comment? Tell me in the comments, let me know. Let me know if you're capable of communicating with stroke survivors better or if you can communicate with the general public and they fully understand you. Tell me in the comments.

I want to know. So a part of me was offended that that person said that, but the other part of me understood and it made me realize that stroke survivors understand. Nobody have I ever done a live on Facebook or any social media and a stroke survivor told me, Karina, you're you're really cool, but I don't understand you.

You don't make sense yet a person that is not a stroke survivor told me and my spouse told me, so there has to be some truth in there. But at the same time, I want you to realize that it's important for stroke survivors to stick together because it's very easy to not feel between brackets normal. It's very easy to feel like there's something constantly wrong with you.

You are the big monster. There's something wrong with you. I assure you, there is nothing wrong with you. And even though your life, your life is part of you might be married, you have families and this and that, your life is not going to change. But by being and sticking with stroke survivors that are making you feel like what you're feeling is completely normal is what's going to make it so enjoyable and durable to to be.

And you are going to reclaim your identity. You are going to say, hey, this is how I am, love me the way I am. I'm sorry. I'm going to do my best to to make our relationship more understanding like when we speak, but this is how I am right now. So don't forget to stick with your community, to continue feeling good about yourself and true to yourself. There's nothing wrong.

I'm not saying anything, but I noticed a very big discrepancy between being with our community that understands us and being with the outside world. I'll give you another quick, quick, quick example before I give you those tips that I promised. I went to the hospital last week for some tests and at the end before coming home, I stopped at the coffee shop at the hospital to get a coffee.

So the girl behind the counter, I say, can I have a medium coffee, 3 creams. The girl behind the counter says, oh, I'll give you your coffee and the cream is over there. You can put it yourself. The other waitress, that she was an older lady, she's evidently been there a longer time. She looked at me and she saw my hand clasp to my chest or rather to my side, and my fist of my affected hand. And she looked at me and smiled and said, don't worry about it, we're going to put it in for you. She noticed, you see, she's been in the environment where the she sees stroke survivors all the time. She sees people with disabilities all the time. And she was very in tune to help. And the other one was not a

BITCH. She just didn't know. I couldn't be upset at the girl. She didn't know. So that also made me realize that our community knows and recognizes each other and people on the outside. How many people come up to you and say you don't look like you had a stroke? You look fine. You might have a fully operative body, but your mind is affected and it ticks you off because people just don't get it.

So I'm not going to go on and on about this, but I want you to realize that you are perfectly fine the way you are and it's important you stick with people that understand. That way you will love and you can endure the shit other people tell you. I know it sounds mean what I mean, but I don't. Don't forget, I've been in this world 28 years. I've been married three times.

I know what other people think when I tell you this. OK, you are great. The episode today is brought to you by Cafe De Nessi. This is a contributor that believes in the mission, that believes in the cause, and they want to help. So thank you to Cafe de Nessi. They have this amazing pizza that is so delicious.

It's called the Big Mac pizza. They also have submarines that are made from pizza dough, bread, cappuccinos, Americanos, all the coffees you can dream of. But what is my favorite day of the week? Fridays. Why they're they have karaoke night there and delicious espresso martinis. When you come to Montreal, you have to visit Cafe de Nessi in Pizza we crust. Now is the perfect time where you could get your pen and paper because I am going to give you two ways, 2 simple ways that you can help your aphasia disappear.

It's not magic, you got to work hard at it, but it can it it's going to happen. The first way is to slow down when we have anything that happened to our brain, such as a stroke or TBI. Well, we talk fast and when we get fast we forget to pause. And when we talk fast, the ideas are not clear. So by slowing down, you get your point across, you take the time to pronounce properly and you get listened to properly. Slow down.

And the second way requires you to spend a little bit more time at this, but it is so effective. Guys, this is the way that I'm practicing that I'm helping my aphasia. When you write something down, it could be anything and read it out loud. What happens is that when you put it on paper, it's because you thought about it and you're putting it on paper. But the problem with aphasia is the connection between the brain and the mouth.

The words that you say are not being conveyed properly. So by reading out loud what you just wrote, whether it's a grocery list or a podcast episode, it doesn't make a difference. Read it out loud. That way you can correct yourself. Pause when there's a a period, pause when there's a comma. So you get to kill two birds with one stone.

You're talking slowly and you're writing and reading at the same time. So honestly, these are two very simple things you can do to help yourself. Love you very much, guys. Today's episode is complete. This is what I have for you today. Make sure that you like, follow, subscribe on any podcast platform that you're listening to as well as on YouTube and make sure that you love each other, that you do your homework. But jeez Louise, you got a comment. Tell me, what are the things that you people repeat to you that there's a miscommunication happening between the two of you?

Comment that I want to know and also comment which method are you going to try? Sounds good. That being said, I love you. Bye.

S10E29: FRUSTRATION OF APHASIA IN COUPLES.

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